Since the birth of the first test-tube baby, Louise Brown, in 1977, we have seen truly remarkable advances in biotechnology. We can now screen the fetus for Down Syndrome, Spina Bifida, and a wide range of genetic disorders. We can rearrange genes in DNA chains and redirect the evolution of species. We can record an individual's genetic fingerprint. And we can potentially insert genes into human DNA that will produce physical warning signs of cancer, allowing early detection. In fact, biotechnology has progressed to such a point that virtually any kind of genetic manipulation, if not already possible, is just around the corner. But these breakthroughs also raise serious ethical and moral dilemmas that we are only now beginning to confront. In Wonderwoman and Superman, noted medical ethicist John Harris offers the first thorough analysis of the moral dilemmas created by the revolution in molecular biology. Covering a wide array of recent innovations, Harris discusses, for example, the moral decisions involved and the consequences of creating egg and embryo banks. Who should be allowed to use such resources? Should recipients be screened? Should such banks be open for public or private use? And does it cheapen life to make embryos available for sale? In another chapter, Harris examines the question of conceiving children chiefly for organ donation, focusing on the recent case of a woman who wanted to have a second child to provide a bone marrow donor for her first child sick with leukemia (she intended to abort the fetus if its bone marrow did not genetically match that of her living child). In this case, the medical staff had to decide whether they should perform in-vitro fertilization, knowing that the mother did not satisfy the clinic's criteria (there was no father), and also knowing the potential for abortion. Discussing the ethics of the mother's choice and the clinic's choice, Harris asks whether it is morally correct to create a child as an organ donor, whether the future child would suffer, whether it is worth any suffering to be born, and who has the right to weigh the various factors (both moral and physiological) involved in making these decisions. Delving into a multitude of issues such as when life begins, when suffering is needless, and whether we should play God, Wonderwoman and Superman provides not only a thought-provoking inquiry into the potential and actual ethical dilemmas created by the many advances in biotechnology, but challenges us to learn to choose responsibly and to face the moral implications of the choices that confront us
http://philpapers.org/rec/HARWAS
The Ethics of Human Genetic Engineering
Thursday, June 4, 2015
http://www.nature.com/scitable/topicpage/embryo-screening-and-the-ethics-of-human-60561
Screening Embryos to Eliminate Risk for a Single Disease
Most recently, and even more controversially, at least two British couples have relied on PGD to screen embryos for the presence of BRCAmutations associated with increased risks of breast cancer. Both couples came from families that had suffered several generations of breast cancer, and both couples wanted to eradicate breast cancer from their lineage once and for all. In Britain, all PGD procedures must be approved by a formal regulatory agency, the Human Fertilisation and Embryology Authority (HFEA), and these cases initially stumped the HFEA. Debate among HFEA members centered around the fact that testing positive for the BRCA1 or BRCA2 variant associated with breast cancer means only that an individual is at risk for developing breast cancer. Not all embryos with breast cancer-associated BRCA mutations necessarily develop breast cancer as adults. Moreover, most individuals who eventually develop breast cancer have 40 or 50 years of healthy life before becoming ill. After lengthy deliberation, the HFEA finally approved the couples' requests.
Professor Green alluded to the HFEA's decision in his Washington Post article. "To its critics, the HFEA, in approving this request, crossed a brightline separating legitimate medical genetics from the quest for ‘the perfect baby,'" he remarked. "Like it or not, that decision is a sign of things to come—and not necessarily a bad sign."
It is not a bad sign, Green argues, because "knowing more about our genes may actually increase our freedom by helping us understand the biological obstacles—and opportunities—we have to work with." Green foresees a day when our scientific understanding of the genetics of obesity, for example, will be so advanced and our technology so sophisticated that, "eventually, without discarding embryos at all, we could use gene-targeting techniques to tweak fetal DNA sequences. No child would have to face a lifetime of dieting or experience the health and cosmetic problems associated with obesity. The same is true for cognitive problems such as dyslexia. Geneticists have already identified some of the mutations that contribute to this disorder. Why should a child struggle with reading difficulties when we could alter the genes responsible for the problem?"
Many scientists are doubtful that a day like this will ever come, given that most human traits are influenced by multiple genes interacting not just with each other, but also with the environment. Just as not all embryos with breast cancer-associated BRCA mutations will necessarily develop breast cancer as adults, embryos with altered genes may not necessarily develop the desired traits. The journey from embryo to adult is extraordinarily complex and impossible to predict.
What do you think?
But suppose science surprises us and that day does arrive. Green argues, "[T]he critics' concerns may be less troublesome than they appear." He insists that parents will not love their children any less in the quest for perfection, and children will not feel pressured to live up to perfectionist expectations; if they do, the problem is with the parenting, not the genetic manipulation. While Green concedes that certain social effects might be worrisome, such as the production of a "genobility," or a ruling genetic class, he also sees PGD as a tool for reducing the class divide by "genetically vaccinating" individuals against potential hardships like obesity and dyslexia.
Dr. Hayes vehemently disagrees, arguing that while the technology of PGD has the potential to eliminate many horrible diseases, it could also do some real harm: "If misapplied, [these technologies] would exacerbate existing inequalities and reinforce existing modes of discrimination. . .thedevelopment and commercial marketing of human genetic modification would likely spark a techno-eugenic rat-race. Even parents opposed to manipulating their children's genes would feel compelled to participate in this race, lest their offspring be left behind." Will all couples, regardless of their fertility issues, go the arduous route of PGD? How will they decide what to do when the likelihood of the "perfect baby" is pitted against the financial and emotional cost involved?
Hayes points to Green's own cited statistic—that 80% of Green's students indicated in a survey that society should not move in the direction of human genetic engineering, a figure in agreement with public opinion polls on the subject. Hayes writes, "[Green] would be wise to listen to what medical students, the great majority of Americans, and the international community appear to be saying. . .[W]e don't want to run the huge risks to the human community."
What do you think these risks are?
TED posted a jaw-dropping talk from Paul Root Wolpe that rounds up new bio-engineering experiments, most involving animals, that push our current ethical systems to their limits. From bioengineered glow-in-the-dark pets to supersized salmon, from ratbots to the mouse that grows a human ear — Wolpe asks us to think deeply about what bioengineered animals mean. The TED Blog talked with Wolpe yesterday and asked a couple of followup questions on how we might frame these brave new ethical dilemmas. Go to this link to find out more: http://blog.ted.com/you-need-to-engage-the-ethical-question-all-along-the-way-a-qa-with-paul-root-wolpe/
The Alliance for Humane Biotechnology (http://www.humanebiotech.com/contactus.html) is a non-profit corporation dedicated to raising public awareness about the social implications of genetic engineering and other biotechnological and reproductive technologies. They speak on issues such as the use of :
Designer Babies
'Designer babies' debate should start, scientists say
By James Gallagher Health editor, BBC News website
19 January 2015 From the section Health
Rapid progress in genetics is making "designer babies" more likely and society needs to be prepared, leading scientists have told the BBC. Dr Tony Perry, a pioneer in cloning, has announced precise DNA editing at the moment of conception in mice. He said huge advances in the past two years meant "designer babies" were no longer HG Wells territory. Other leading scientists and bioethicists argue it is time for a serious public debate on the issue. Designer babies - genetically modified for beauty, intelligence or to be free of disease - have long been a topic of science fiction. This is not HG Wells, you can imagine people doing this soon Dr Tony Perry, University of Bath Dr Perry, who was part of the teams to clone the first mice and pigs, said the prospect was still fiction, but science was rapidly catching up to make elements of it possible. In the journal Scientific Reports, he details precisely editing the genome of mice at the point DNA from the sperm and egg come together. Dr Perry, who is based at the University of Bath, told the BBC: "We used a pair of molecular scissors and a molecular sat-nav that tells the scissors where to cut. "It is approaching 100% efficiency already, it's a case of 'you shoot you score'." New era It is the latest development of "Crispr technology" - which is a more precise way of editing DNA than anything that has come before. Sperm injected into egg Prof Perry said the technique could one day be performed during fertility treatment It was named one of the top breakthroughs in 2013, hailed as the start of a new era of genetics and is being used in a wide-range of experiments in thousands of laboratories. As well simply cutting the DNA to make mutations, as the Bath team have done, it is also possible to use the technology to insert new pieces of genetic code at the site of the cut. It has reopened questions about genetically modifying people. Prof Perry added: "On the human side, one has to be very cautious. "There are heritable diseases coded by mutations in DNA and some people could say, 'I don't want my children to have these mutations.'" This includes conditions such as cystic fibrosis and genes that increase the risk of cancer. "There's much speculation here, but it's not completely fanciful, this is not HG Wells, you can imagine people doing this soon [in animals]. "At that time the HFEA [the UK's fertility regulator] will need to be prepared because they're going to have to deal with this issue." He said science existed as part of a wider community and that it was up to society as a whole to begin assessing the implications and decide what is acceptable. Time for debate Prof Robin Lovell-Badge, from the UK Medical Research Council, has been influential in the debate around making babies from three people and uses the Crispr technology in his own lab. There needs to be a debate... and some rational thought rather than knee-jerk reactions that, 'No you can't possibly do that' Prof Robin Lovell-Badge, Medical Research Council He said testing embryos for disease during IVF would be the best way of preventing diseases being passed down through the generations. However, he could see such potential uses of "germ-line therapies" for men left infertile by damaging mutations. While they can have children through IVF, any sons would still have the mutations and would in turn need IVF. Genetic modification could fix that. It would also be useful in circumstances when all embryos would carry the undesirable, risky genes. Prof Lovell-Badge told the BBC News website: "Obviously in the UK, this is not allowed and there would have to be a change in regulations, which I suspect would have enormous problems. "But it is something that needs to start to be debated. "There has been a blanket ban on germ-line therapy, so there needs to be a debate about that and some rational thought rather than knee-jerk reactions that, 'No you can't possibly do that.'" DNA Such a debate would also have to move beyond therapies into the field of babies designed to have desirable traits. Some alternations would only require small changes to DNA, such as some changes to eye colour or to make a child HIV-resistant. The respected Nuffield Council on Bioethics is understood to be considering a report on the issue. Its verdict in 2012 that it was ethical to create babies from three people formed a core part of the public debate on the issue. At the time it said a much wider debate on germ-line therapy was still needed. Complex ethics Its director, Hugh Whittall, told the BBC: "I think this is a challenge, for all of us, we should get onto looking at this fairly rapidly now." He said the field raised questions of social justice around techniques available only to the rich and what constituted identity as well as "issues of governance and regulation". Dr David King, from the campaign group Human Genetics Alert, echoed calls for the public to engage with the issue. He said: "I think it's pretty inevitable that we'll get to a point where it's scientifically possible, certainly these new techniques of genome editing have made something look much more feasible than it did five years ago. "But that does not mean to say it's inevitably the way we have to go as a society." This is still a matter of science fiction and there is a huge amount of research - particularly on unwanted mutations, efficiency and safety - that needs to be done before any attempt of humans would even be considered. A spokesman for the UK's Human Fertilisation and Embryology Authority said: "We keep a watchful eye on scientific developments of this kind and welcome discussions about future possible developments." He said it "should be remembered that germ-line modification of nuclear DNA remains illegal in the UK" and that new legislation would be needed from Parliament "with all the open and public debate that would entail" for there to be any change in the law.
By James Gallagher Health editor, BBC News website
19 January 2015 From the section Health
Rapid progress in genetics is making "designer babies" more likely and society needs to be prepared, leading scientists have told the BBC. Dr Tony Perry, a pioneer in cloning, has announced precise DNA editing at the moment of conception in mice. He said huge advances in the past two years meant "designer babies" were no longer HG Wells territory. Other leading scientists and bioethicists argue it is time for a serious public debate on the issue. Designer babies - genetically modified for beauty, intelligence or to be free of disease - have long been a topic of science fiction. This is not HG Wells, you can imagine people doing this soon Dr Tony Perry, University of Bath Dr Perry, who was part of the teams to clone the first mice and pigs, said the prospect was still fiction, but science was rapidly catching up to make elements of it possible. In the journal Scientific Reports, he details precisely editing the genome of mice at the point DNA from the sperm and egg come together. Dr Perry, who is based at the University of Bath, told the BBC: "We used a pair of molecular scissors and a molecular sat-nav that tells the scissors where to cut. "It is approaching 100% efficiency already, it's a case of 'you shoot you score'." New era It is the latest development of "Crispr technology" - which is a more precise way of editing DNA than anything that has come before. Sperm injected into egg Prof Perry said the technique could one day be performed during fertility treatment It was named one of the top breakthroughs in 2013, hailed as the start of a new era of genetics and is being used in a wide-range of experiments in thousands of laboratories. As well simply cutting the DNA to make mutations, as the Bath team have done, it is also possible to use the technology to insert new pieces of genetic code at the site of the cut. It has reopened questions about genetically modifying people. Prof Perry added: "On the human side, one has to be very cautious. "There are heritable diseases coded by mutations in DNA and some people could say, 'I don't want my children to have these mutations.'" This includes conditions such as cystic fibrosis and genes that increase the risk of cancer. "There's much speculation here, but it's not completely fanciful, this is not HG Wells, you can imagine people doing this soon [in animals]. "At that time the HFEA [the UK's fertility regulator] will need to be prepared because they're going to have to deal with this issue." He said science existed as part of a wider community and that it was up to society as a whole to begin assessing the implications and decide what is acceptable. Time for debate Prof Robin Lovell-Badge, from the UK Medical Research Council, has been influential in the debate around making babies from three people and uses the Crispr technology in his own lab. There needs to be a debate... and some rational thought rather than knee-jerk reactions that, 'No you can't possibly do that' Prof Robin Lovell-Badge, Medical Research Council He said testing embryos for disease during IVF would be the best way of preventing diseases being passed down through the generations. However, he could see such potential uses of "germ-line therapies" for men left infertile by damaging mutations. While they can have children through IVF, any sons would still have the mutations and would in turn need IVF. Genetic modification could fix that. It would also be useful in circumstances when all embryos would carry the undesirable, risky genes. Prof Lovell-Badge told the BBC News website: "Obviously in the UK, this is not allowed and there would have to be a change in regulations, which I suspect would have enormous problems. "But it is something that needs to start to be debated. "There has been a blanket ban on germ-line therapy, so there needs to be a debate about that and some rational thought rather than knee-jerk reactions that, 'No you can't possibly do that.'" DNA Such a debate would also have to move beyond therapies into the field of babies designed to have desirable traits. Some alternations would only require small changes to DNA, such as some changes to eye colour or to make a child HIV-resistant. The respected Nuffield Council on Bioethics is understood to be considering a report on the issue. Its verdict in 2012 that it was ethical to create babies from three people formed a core part of the public debate on the issue. At the time it said a much wider debate on germ-line therapy was still needed. Complex ethics Its director, Hugh Whittall, told the BBC: "I think this is a challenge, for all of us, we should get onto looking at this fairly rapidly now." He said the field raised questions of social justice around techniques available only to the rich and what constituted identity as well as "issues of governance and regulation". Dr David King, from the campaign group Human Genetics Alert, echoed calls for the public to engage with the issue. He said: "I think it's pretty inevitable that we'll get to a point where it's scientifically possible, certainly these new techniques of genome editing have made something look much more feasible than it did five years ago. "But that does not mean to say it's inevitably the way we have to go as a society." This is still a matter of science fiction and there is a huge amount of research - particularly on unwanted mutations, efficiency and safety - that needs to be done before any attempt of humans would even be considered. A spokesman for the UK's Human Fertilisation and Embryology Authority said: "We keep a watchful eye on scientific developments of this kind and welcome discussions about future possible developments." He said it "should be remembered that germ-line modification of nuclear DNA remains illegal in the UK" and that new legislation would be needed from Parliament "with all the open and public debate that would entail" for there to be any change in the law.
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